"For any person, regardless of whether they have aHUS or not, the kidneys tend to spill a little protein when the body is fighting an infection. There are also increased levels of protein in the urine after hard physical activity or with stress.…"
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Kortnee Fornetti
- Female
- Kingsford, MI
- United States
- Blog Posts (2)
- Discussions
- Events
- Photos (14)
- Photo Albums (2)
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Kortnee Fornetti's Page
Profile Information
- Birthday
- May 1
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Kortnee Fornetti's Blog
Strep Throat and aHUS?
Hello! My son, Kaleb, was just diagnosed with strep throat today and just to be safe, based on our past experience with aHUS, our pediatrician ran a urinalysis. It tested positive for some small amounts protein and blood. I read a little bit about the affects of strep throat on the kidneys and apparently this can be common and usually resolves itself. Could this affect a child with aHUS differently? I was just wondering if anyone else has had an experience with their child who has had aHUS and… Continue
Posted on December 7, 2010 at 10:40pm — 6 Comments
Our Story
Hi!
My name is Kortnee and my son, Kaleb, who will be 3 in April, was diagnosed with aHUS just 3 weeks ago. It's been a whirlwind experience! We began bringing him into the pediatrician about 4 weeks ago with, what I thought was, pink eye. The eye infection did not go away after a week of antibiotic ointment so I brought him in again. This time he had an ear infection on top of the eye infection. By that evening he began vomiting. I brought him in… Continue
Posted on February 9, 2010 at 12:00am — 4 Comments
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Kortnee Fornetti commented on Kortnee Fornetti's blog post Strep Throat and aHUS?"Thank you for all of your responses! It was very helpful to have your feedback. We did have labs run today and the CBC came back with good results and a second urinalysis looked better than yesterday! Whew! Thank you again and I will be praying that…"
Linda Burke commented on Kortnee Fornetti's blog post Strep Throat and aHUS?"Gee Kourtney....we went to our wonderful primary care physician late this afternoon and Skyler also was diagnosed with strep throat today! We've never had a case of strep throat for Skyler before, but normally I'd opt to run Skyler's…"
Jodi Kayler commented on Kortnee Fornetti's blog post Strep Throat and aHUS?"Hi Kortnee, It's good to be concerned. Any bug has the potential of triggering an immune system response that causes the HUS. The bad bugs like strep, pneumonia, rotovirus, etc. are especially prone to causing a relapse. We found that Coen…"
Heather Still commented on Kortnee Fornetti's blog post Strep Throat and aHUS?"I agree with Cheryl. It really depends on the individual. Ryan has not had strep, but when the disease was more active his labs would get worse with a cold or virus and we would do a "precautionary" infusion. Just keep being proactive and…"
Cheryl Biermann commented on Kortnee Fornetti's blog post Strep Throat and aHUS?"It really depends on the child, for our son Nathan, strep was baaaad news. It always led to a pretty severe relapse and resulted in a few weeks in the hospital, when he was five, they took his tonsils and andenoids out because he had had strep an…"
Kortnee Fornetti posted a blog postStrep Throat and aHUS?
Hello! My son, Kaleb, was just diagnosed with strep throat today and just to be safe, based on our past experience with aHUS, our pediatrician ran a urinalysis. It tested positive for some small amounts protein and blood. I read a little bit about the affects of strep throat on the kidneys and apparently this can be common and usually resolves itself. Could this affect a child with aHUS differently? I was just wondering if anyone else has had an experience with their child who has had aHUS and…See More
Kortnee Fornetti commented on Heather Still's blog post Creating a better hospital experience"Hi Heather! Kaleb stayed at the Childrens Hospital of Wisconsin and they had so many great programs for the kids there. They also had a Family Resource Center with literature and information about diseases and other medical information. They were…"
Kortnee Fornetti left a comment for Lisa Goble"Hi Lisa! I am from the Upper Peninsula of Michigan and my son, Kaleb, who will be 3 in April, was just diagnosed with aHUS in January and spent 3 weeks at the Childrens Hospital of Wisconsin. I read some of your blogs and it surprised me how much we…"
Kortnee Fornetti left a comment for Katie Johnson"Hi Katie! I'm from the Upper Peninsula of Michigan and was looking to connect with others affected by aHUS closer to our area. My son Kaleb, who is almost 3, was treated for 3 weeks at the Children's Hospital of Wisconsin for aHUS. Just…"
Kortnee Fornetti left a comment for Bill Biermann"Thanks Bill! What a great idea and so easy too! We will do that! Thanks for the support!"
Bill Biermann commented on Kortnee Fornetti's blog post Our Story"Hi Kortnee, I wish we could meet under different circumstances, but thank you for sharing your story. It is a trait of a parent with aHUS to be constantly on edge, (that's what other people call it, we call it vigilance!), and it is what Kaleb…"
Comment Wall (6 comments)
- At 9:41am on February 9, 2010, Heather Still said…
- Thanks for sharing Kaleb's story. He's a handsome little man!!! You have every reason to be overprotective, especially in the early stage. I am still jumpy when Ryan gets the least bit sick and he's been diagnosed for almost 8 years now. I truly believe that my jumpiness is what has kept his kidneys hanging on for this long. I think that diligence with extra plasma therapy the instant his labs fluctuate has made a huge difference in his success. He currently gets plasma infusion biweekly and I don't think we'll try to decrease that frequency. We did once and he had an active episode again and ended up damaging his kidneys a little more, so now we're afraid to do it again.
That's the shortest version of our story I can give. Looking forward to updates throughout your journey.
- At 7:43pm on February 8, 2010,
Svetlana Finley said… - Welcome here, your little one is so cute, love his picture!! Can't wait to get to know you and your family, keep us updated.
- At 6:28pm on February 8, 2010, Heather Still said…
- Welcome to this wonderful site. I hope you have had a chance to look through all of the great information families have shared here and am looking forward to hearing more about you and your family.
- At 6:25pm on February 8, 2010, Cheryl Biermann said…
- Oh, he's so cute!
- At 11:33am on February 8, 2010, Linda Burke said…
- Hi Kortnee,
Thanks for joining this site, a place to share information, inspiration, and insight into this rare disease. The Foundation for Children with Atypical HUS welcomes your participation through comments and/or questions in the various Forum interest areas or in members' blogs. Please let us know if there's a specific aHUS issue or concern you'd like to explore.
- At 11:32pm on February 4, 2010, Cheryl Biermann said…
- Hi, welcome to our interactive site, as you can see, we have a lot of information here, but if you are new to this, a good place to start would be the drop down tab, from a parent's perspective and also the static informational site-www.atypicalhus@50megs.com. Please feel free to jump right in, we are glad you found us.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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